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Deafness and Dementia

Today, dear readers, I bring you the saga of dad and his rather wonky relationship with his hearing aids, and also the sad tale of going to a magnificent organ recital at Southwell Minster without being able to hear properly.

Dad is fairly deaf. Without his hearing aids he is unable to hear much, but even with them we often find he cannot tell what we are saying. Sometimes he will sit and fiddle and pull them out of his ears, and the hearing aids will squeak and whine and drive everybody nuts except dad who cannot make out what we are moaning about. In the past he used to take them apart and try to fix them and was then unable to put them back together again, but his Alzheimer’s is so bad now that it no longer even occurs to him to attempt this.

Now when dad can’t hear the first thing I do is to persuade him to hand over the goods so that I can check his hearing aids. This usually results in the discovery that:

a) He has not put a battery in, or it has fallen out and he didn’t notice.
b) The battery still has the sticky label on the back.
c) The tubes in the hearing aids are blocked with wax.

Sometimes it is simply a case of a dud battery, but dad no longer appears to hear or understand the diddly tune that the hearing aid plays to indicate that the battery is working.

Last week I visited dad to take him for a walk with the dog and then waffles and maple syrup at the local coffee shop afterwards. When I arrived a rather puzzled looking staff member was trying to clean and adjust his hearing aids. Together we tried to prize off tubes, clear out wax, and find some batteries that actually appeared to work. This task was not helped by the fact that the box of spare batteries had magically disappeared.

Meanwhile dad huffed and puffed around his room, unable to hear a word we said and unable to read the messages I tried to write down because he could not see. He looked for his ‘puffer’ – a rubber contraption that puffs air through the hearing aid tubes to clear them of wax and rubbish. I tried to indicate to him that I had already managed to clean the tubes but he was determined. The proverbial rock and the hard place would both disintegrate instantly if they encountered a dad-level of stubbornness.

Eventually dad located the ‘puffer’ on his washbasin and shared with us that he has been filling it with water and squirting this into his ears to clean them! (Dad, along with his dementia and poor eyesight, is finding some intriguing new uses for things – for instance smoothing the bumps on his nose using his electric razor or rubbing toothpaste into his leg instead of his ulcer-prevention cream).

Hearing aids sorted, dad was still unable to hear. We consulted one of the nursing team about checking his ears for wax and syringing them properly, but this had been done recently and was not safe to do on a frequent basis. We resigned ourselves to dad being completely deaf for the day and breathed a sigh of relief that the service appointment I had made at the hearing aid clinic happened to be the next day.

So how did things pan out? Why, you might ask, did dad have to go to the organ concert four days later without his hearing aids?

Well apparently the hearing aids work perfectly, but sadly dad was found to have a bad ear infection in both ears – no doubt exacerbated by using a ‘puffer’ as an impromptu syringe. He was still under treatment for the infection when we did our trip to Southwell Minster (Matthew Martin’s organ playing was amazing, with a very interesting repertoire of pieces) and his hearing aids were soaking in sterilizing solution. Despite going hearing aid-less, dad could hold a level of conversation if I spoke loudly as I faced him – it was the infection that had rendered him unable to hear at all.

What struck me most, though, was how absolutely helpless we were when dad found himself completely deaf. We could not communicate or reassure him at all because of his poor eyesight – he has recently been registered as Severely Sight Impaired – and because of his tendency to fixate on inappropriate things. It felt so sad seeing him flail around in distress seeking his own solutions and repeatedly asking ‘why can’t I have my hearing aids?’ It reminded me how important gentle reassurance and explanation can be for people like dad who are living with dementia.

Hopefully by the time I see him next he will be back to normal – whatever that is in his dazzlingly different dementia universe – complete with hearing aids and pristinely clean ear canals.

annedegruchy.co.uk image: Dad and Southwell Minster

MAD MOMENT

It has been a while since I posted a ‘mad moment’ so I shall cheat and borrow one from a few weeks back when I was ill with a viral bug and simply couldn’t stand up without fainting. I was crawling round the house and going to the loo was a trial. One time I could feel myself losing consciousness as I tried to reach the loo and the next moment I woke up on the floor with a broken toilet seat cover lying on top of me. The pain from the fall and the damage to my pelvis has been excruciating. It felt so surreal, just coming to after blacking out and finding myself there with the toilet cover and bruises all up my right side. Am very nervous of any feelings of dizziness now.

MARVEL MOMENT

Wonderful walk round the heathland and woods of Woolbeding Common during a visit to Sussex for a friend’s wedding anniversary do. Just drinking in the peace and watching the butterflies. The joy of being able to stand upright and go for short walks again!

© Anne de Gruchy

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In Praise of Eggs

Over the past couple of weeks my father and I have made several trips out to some of his favourite watery places – though, to be honest, any place with water is a favourite with dad. And, it being the time of year it is, we had some wonderful encounters with birds and their offspring.

During a visit to Attenborough Nature Reserve Dad managed a long slow walk along the lake edge. He was rewarded for his efforts while we rested on a bench and watched a family of mallards with no less that eleven ducklings meandering and re-grouping in eddies behind their parents. ‘It’s nice here,’ he said, and indeed it was.

Another day we drove out to Trent Lock. Here you will find the blessed confluence of many of Dad’s favourite things. Firstly there is water in several forms: the River Trent, the Erewash Canal and the Cranfleet Cut, and, disappearing off towards the power station, the River Soar. In addition to these joys there are also trains! The main line from London splits here with arms disappearing towards both Derby and Nottingham. Not only that, but the trains travel on bridges over the water.

Here, though, is the sad part. My father’s eyesight is getting so poor that even when a train went over the bridge ahead of us he could hear it but not see it at all.

We took ourselves off for consolation at the teashop where they were serving the most delicious home-made ice cream. It was one of those 30 degrees plus days and I had even managed to persuade Dad to come out without his full vest and jacket regalia. Further, I’d managed to do an application of sun-cream without so much as a grumpy word in response! Clearly the omens of the day were good. Dad, to my surprise, chose pineapple and coconut flavour – even after a taste test – and I had lemon cheesecake (ice cream that is, with the biscuit bits mixed in. Yum!).

We sat there, licking happily. The elderly couple at the next table started up a conversation and Dad was able to compare careers with another man who was an engineer who had worked in the civil service. They had both also worked for the Ministry of Defence. I’m afraid I couldn’t resist revealing my Quakerly and pacifist tendencies at the end of our companion’s proud assertions about his work with Trident. I once experienced a very profound Meeting for Worship outside the Faslane Naval Base on the Clyde – the home of the submarines armed with Trident nuclear missiles. ‘We used to have a lot of problems with you lot,’ our companion told me. I’m sad to say that I simply thought: Yes!!!

Once we’d said our goodbyes, Dad and I wandered on down the canal where we encounted a family of swans. It must have been a productive and predator-light year because there were no less that eight already well-grown cygnets. My father was interested and tried to phrase his ideas but was clearly stuck for the relevant words.

‘The swans and their’ – big pause – ‘babies,’ he said. ‘When they give birth…’ he said. His mind was moving almost visibly. ‘When the babies come out.’

He stopped, flummoxed.

‘The cygnets hatch from eggs,’ I offered. ‘The mother bird sits on a nest with the eggs in to keep them warm until they crack open and the baby birds come out.’

‘Eggs!!’ said my father, happily, as he listened to my explanation. Then: ‘They’re very clever things.’

It occurred to me once again as we had this conversation, how the most effective and reassuring way to deal with someone with dementia is often the same way you might deal with a young child: by offering clarity and simple ‘yes’ and ‘no’ choices, one at a time; by explaining about things that they are curious about; by never reacting in a way that implies they are stupid.

But there was a difference between Dad forgetting that eggs were the way birds hatched their young and the way a young child might learn about them. He clearly required the explanation of how eggs worked in addition to a reminder of the actual word, but once he had grasped what I was describing his face lit up and there was this huge joy at realizing what an interesting and wonderful thing eggs are.

If we are ever tempted to worry about what dementia might mean if it ever happened to us (something I am regularly guilty of), it is perhaps worth remembering that there are a million things about nature and this wonderful world just ready for us to rediscover all over again.

MAD MOMENT

Finally finishing the final final edit of my novel with the support and guidance of a real life – and very excellent – agent. And, to top it all, the manuscript being sent out this week to a round of editors/publishers. I feel like a proper novelist at last! (Please, please give me a publishing deal…)

MARVEL MOMENT

How my front garden has blossomed into this…

www.annedegruchy.co.uk image:  front garden full of flowers

© Anne de Gruchy

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Making your Mark – Dementia and the Mental Capacity to Vote

Yesterday, I took my dad to vote.

So what, you say. But my dad has Alzheimers and, had I not told him about it, he would not have even registered that there was an election let alone that he could choose to vote in it. In fact, had I not made the effort when he first moved into a residential nursing home near me, he would not even appear on the electoral register here.

Me and my family are used to doing things for my dad. I receive and act on most of his mail and my sisters manage his finances and the rental of the house he used to live in. Someone else buys and prepares his food, puts out clean clothes, and shows him how to use the CD player. Someone else does his washing and makes his bed. Someone else gives him any medication he needs and takes him to appointments.

As one of dad’s Lasting Power of Attorneys I am also used to being involved in decision-making in dad’s best interests. He still has plenty of gumption and is well able to make his voice heard, he simply does not always understand the consequences of a particular course of action or have the awareness of what is possible in the first place.

So, dad has choices that we present to him and help him to put into practice, but those choices are totally dependent on us deciding to offer them to him in the first place. This is a big responsibility. It is especially a big responsibility when dad’s level of understanding and mental capacity is in question. It is an even bigger responsibility when, if I offer him the chance to vote, I know he will select the completely opposite political colour to myself in a potentially marginal seat!

I think you will have gathered by now that I am someone who takes my responsibilities seriously. I know that dad is a proud man who likes to do his civic duty. When I told him there was an election and asked if he’d like me to take him to vote his response was an immediate ‘yes’. He may not remember that I had telephoned him 20 minutes before when he said he would like to join me for my trip to the garden centre coffee shop and that he would be ready to go – he was sat in the lounge with a newly brewed pot of coffee when I arrived and insisted on drinking the whole pot before we set off – but he absolutely remembers which political party he has always voted for.

I thought about how much I should take into account dad’s understanding – or lack of it – of politics and the consequences of voting. So, for both this election and the local council elections before, I spent some time talking to him about his choices and what the different parties offered. We talked about the very different party politics in the area of South West London where I grew up, and his memories of voting in the past. He couldn’t remember the names of all the parties, but he knew the one he wanted to give his vote to.

So, with a slightly guilty conscience, I set off with dad for the polling station. My conscience was guilty for two reasons: firstly for the party I supported who were in a close two-horse race with the party dad wanted to vote for, and secondly because I even considered my own views at all when helping dad to exercise his right as a citizen. Why, just because he has dementia, should we write off every aspect of his life and understanding? How easy it would be to abuse the power I had and not to take him to vote at all. If I had wanted to, how easy it would have been to put the ‘X’ in the wrong box (dad is partially-sighted and cannot read the ballot paper or see to fill it in).

So, there I am, dad on my arm, completing forms to show that I have helped someone to vote, reading out to dad the list of candidates and who they represent, and carefully marking his choice on his behalf. I give him the folded ballot paper and guide his hand to the slot to post it in the box. We walk out into the sunshine and he says: ‘Thank you for helping me to vote.’ I feel like a million dollars.

Last night, half-asleep on the sofa in the wee small hours as the results came in, I held my breath as Broxtowe was declared. Dad’s candidate won, with a much reduced majority. I was gutted because I felt that we had a real chance of change here. My only consolation was that we were not the constituency that was returned with a 2 vote majority. That, and helping dad to exercise our hard-won democratic right to determine the kind of government we have.

MAD MOMENT

Nine nutty hours of gardening on behalf of my tenant – scratches, mud, and melting muscles!

MARVEL MOMENT

That Hung Parliament. Just not quite hung enough…

www.annedegruchy.co.uk image: dad and dog on a walk

Isla the dog voted to go for a walk instead…

© Anne de Gruchy

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Edifying Editing Experiences

Well! It has been a while, hasn’t it, since I last ventured a blog post. Is working very very hard a good enough excuse?

By working I don’t just mean my new paid employment. This takes up the first part of my week and involves a job back in the field of mental health. This is my ‘real’ work – the thing that isn’t writing, the thing that actually pays the bills. It also makes me feel like a bona fide member of society again after two years out of paid work caring for my dad and making progress with my books.

But, why shouldn’t being a writer and a carer also make me feel like a bona fide member of society? This is a question I often ask myself, and I suppose it comes down to what I’m actually paid to do. Maybe if (oops, I mean ‘when’!) we sell my book I will actually feel that my writing counts.

When I typed that last sentence I originally put ‘if I sell my book’, then I had to delete the ‘I’ in favour of a ‘we’. This highlights rather well the difference that having an agent has made. (Did you know I now have an agent? Did you know it took me 17 years on-and-off to get there? I know – I’m beginning to be a bore on the subject!). Anyway, I now have the lovely Julia Silk from MBA Literary & Script Agents on my side. And that’s what it feels like – that there is genuinely someone there for me, who believes in my writing and is working alongside me to make the book the best it can be with the aim of finding a publishing home for it.

The whole process of actually signing up with an agency has been pretty nerve-wracking as well as exciting. Firstly there was the trip to London to meet with Julia, and the relief of getting on as well as I thought we would from our telephone conversations and email correspondence. We see eye to eye on my writing and the things that need to be done, and I respect her professional expertise. I knew we could build a relationship of trust. Then there was the scary nature of contracts and all things legal – it was with great relief that I joined the Society of Authors as an Associate Member and received advice from them. A lot of hand-holding was needed. Finally there was the scary nature of handing over the whole manuscript for in depth perusal and editing suggestions from someone else.

For me my books are, cliché that it is, a bit like children. I’ve moulded and refined them, had critiques and feedback, edited and refined again, then sent them out into the world in what I felt was the best shape I could muster. The characters can get stroppy and determined to have their way, but you love them nonetheless. When you get an agent, or indeed a publisher, you are suddenly in deeper waters – trusting your book to the close scrutiny of people who have expertise in the industry but who may not necessarily agree with you about what’s needed. They also have invaluable insights into what will actually sell.

And so it was that I awaited Julia’s suggestions with trepidation. She painstakingly went through the whole manuscript and not only lightened it by 4,000 words, but recommended that I took out a further 5,000. Descriptions that interrupted the flow of the story or messed up the tension were gone, gone, gone. I opened the document nervously and started reading.

What a relief it was to find that, on the whole, I agreed with her suggestions! Even where she had excised passages I felt a little precious about, I could still see why they needed to go. In the whole manuscript there was only one suggested deletion that I have asked to remain in!

Furthermore, the process of my own edit and cull of words felt positive and liberating, and I do feel we have a better book for it. Working one particular character into the plot earlier and enhancing her role also worked well. The manuscript has now winged its way back to Julia and yet again the ball is in her court.

So editing has proved an edifying experience. Now there is just the task of refining and agreeing changes and Julia developing and delivering her pitch to her selected publishers. That, and beginning the process all over again on a whole new book!

And, as for my dad, he is settled and happy at a care home close to me. Although his cancer is proving a little troublesome and his memory remains largely non-existent, we are going out together at least twice a week enjoying strolls with his dog (who is homed with a staff member), concerts, and plenty of meals out. Today we went out and bought him a sunhat. Of course he chose a classic and elegant design just like him!

MAD MOMENT

Setting off for a 10 mile walk over Beeley Moor with a forecast of rain, rain, rain! That, and the fact that there were 15 of us who risked it…

Image:  annedegruchy.co.uk - Beeley Moor

MARVEL MOMENT

Just being back in a job and enjoying it!

© Anne de Gruchy

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Haikus for my Dad

Breakfast routine lost
because there’s no jam. Wondrous
result – full fry-up!

Dad, dog, Bramcote Hills,
mud and early daffodils,
unpredicted sun.

Birthday theatre trip,
puzzled by play. Dementia?
East Midlands’ accents!!

Outside his window
birds in the aviary.
Daily choral joy.

Memory fogs and
can’t play CD. Inside head
The Sound of Music.

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Contracting Worlds

A funny thing has happened recently – my Quakerly studies and thinking about simplicity have collided with my dad’s evolving care needs and his move into residential care, and I find that I am in solidarity with my father’s contracting world!

It is a hard thing to have to move away from your home and all that is familiar into a single bedroom within a communal setting – especially when you are a private man used to your own company and that of your little dog. It is harder still to make the move when you don’t understand or accept the reasons for it because of the effects of Alzheimers.

It has been an emotional time for all the family. My father has been assessed under the Mental Capacity Act and it has been acknowledged that he needs 24 hour care and the safety and support a residential care setting can give. Dad has agreed that the residential setting concerned should be the brilliant nursing home we have found here in Nottingham – near to me, his eldest daughter, and not in Dorset where he lived before. This does not mean that he is in agreement with the decision, but he has now accepted that he is staying and his anxieties have moved on to what will happen to his house and his possessions.

I cannot tell you how weepy and pathetic the whole process has made me. I understand the system well, having worked in mental health and dementia care for many years, but there is nothing that can prepare you for how it feels to have to make life choices on behalf of your own father. Even though our family is in full agreement about the best course of action to support dad and to give him the highest possible quality of life given his needs, it doesn’t stop that wrenching gut when you know that all he wants is to sit by his patio door in his favourite swivel chair and look out over the Blackmore Vale again.

So dad’s world is contracting. His Probus and 41 Club visits have been replaced by ones with a dysfunctional daughter – taking the dog for a walk by the canal or going to a classical concert in a city he remembers fondly from the times when I was a student here. Waxed up ears no longer require trips to the GP with a carer, but can be dealt with ‘on site’ (‘at home’, I should say) by one of the nurses at the care home. If he wanted he could chat to the many articulate and friendly members of ‘the family’, but, as I said, my father is a private man.

Having to reduce your possessions to what will fit in one room is a challenge, and has really made me consider what has value in life. Dad is unable to recall much, but together we are working out a hit-list of things he does not want to do without. He is not a sentimental man, but most of what will remain actually has a high sentimental content – photographs of the family and dad’s dog, soft toys that he has become attached to, railway books and CDs of favourite music even though he no longer plays these, some furniture from his house.

Dad’s situation set me to thinking how I would handle an enforced downsize – assuming my brain still worked more-or-less normally – and I came to the conclusion that it is about making positive choices rather than negative ones. What are the things that I would really value and need? What would sustain and uplift me? It would surely involve considering what I would like to take with me rather than what to leave behind. We are back to the old chestnut of that quote from William Morris: ‘Have nothing in your house that you do not know to be useful, or believe to be beautiful.’

But it is more than that. When our world contracts it comes down to the relationships we have with both other people and ourselves – and, of course, God. My dad’s relationship with his daughters and his local friends has largely determined the level of care and support he has had in recent years. Familiar faces, even though names are long-gone, are welcome and reassuring. Routine, and a sense of self within it, helps to anchor him in a new place.

I have spent a lot of time recently considering what simplicity means to me, and I am perhaps moving away from it being to do with possessions (although what we own, and how much, is of course important and reflects our values in a world of huge inequality) and moving towards making space for that connection with God. Centering prayer and meditative practice provide a deep grounding that immediately feels simple – it is emerging out of this into the world that proves more difficult. For me the knack is to keep that sense of simplicity, of an integral connection to God, in everyday actions and activities.

So here our worlds join up again. A simplicity that connects us to God and drops away the importance of possessions and places. Old age and ill health may result in a contraction of our world, but in doing so it makes us focus on what is really important in our lives and maybe, just maybe, helps us to connect more intensely to God in the process.

MAD MOMENT…

Playing ‘musical furniture’ in dad’s new room – trying to find the most relaxing and practical arrangement – only to end up back at the original layout half an hour, and a lot of puff, later.

MARVEL MOMENT…

The intense joy of singing with others at a recent joint concert with another community choirs.

© Anne de Gruchy

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Memory Boxes

Following the ‘Cumulative Caring Crises’ that I posted about recently (blog post here) we have now accepted a respite care bed for my dad at the lovely residential home near me. My sister travelled over from France especially to bring dad up to Nottingham following his hospital appointment to check the progress of his bladder cancer. We are not mentioning the ‘L’ (Long-Term) word – just giving him time to settle and benefit from the attention, help and kindness of the staff.

It is hard and sad to see him alternating between being unsure and asking about going home, and being settled and enjoying a meal out with us and a walk by the canal. The home is busy and colourful – something that dad is not used to but that results from their caring, hands-on approach. My sister described it as ‘like Tracy Beaker’s orphanage – all bright colours and busyness’!

I feel too emotional to report in depth, but wanted to share the image below. The home has ‘Memory Boxes’ outside each bedroom where residents can display photos and objects that remind them of people that are important to them, or show a little about their tastes, hobbies and life. It is wonderful to walk along the corridor of bedrooms past model sports cars, or Forest shirts and football paraphernalia, or faded sepia photos of childhood days with mum or dad.

So I got out my felt-tips and produced a ‘Best Dad’ image with a steam train and mounted a photo of dad with his three daughters below. I hope it helps him find his room and remember that we love him, although I think he will respond more to the idea of steam and a good chug-chug sound!

2016-09-26-14-12-30